And then it happened...

It's been 10 days. Only 10 days. I cannot believe how much has happened in the past 10 days. It has been comforting having family in town and friends stopping by. And of course, it has been a distraction. A great distraction to say the least.

My great friend, Christina, got the call that a kidney was ready for her son, Jonah. Jonah has been waiting for this kidney for a long time, and has been through so much to make it to this point. More surgeries than Conley. And just as much heartache. Jonah and his family have been through way more than the average kidney family. Every turn was met with obstacles. But, they got the call within 48 hours of Conley's passing. It seems as though Conley got right to work up there!

The paper our fetal specialist wrote about the amnioinfusions we had during our pregnancy with Conley was released. All this happened in the same weekend.

And then Choice was sent home from school with a fever. I spent most of the week catering to him and lugging him around with me to do different tasks. He of course enjoyed every minute of it!

We planted Conley's beautiful Texas Redbud tree in our front yard and spread some of his ashes under the roots. Yes, we had Conley cremated because I couldn't bare the thought of having him laying on his back in the ground for the rest of his life. He laid on his back in a hospital bed for too many days of his life. Now, he will always be with us. In our home, and right outside. If I want to be with him.

I opted to get back into the Bikram Yoga (what was I thinking?!).

I spent one day in the San Antonio Transplant Hospital visiting Jonah and family as he is recovering from his kidney transplant, and then met Jonathan and Choice at the zoo. Choice had never been to the zoo before.

It was a busy 10 days. So far, I've been okay. Okay is the word I've been using when people ask how I am because there is no word to really describe how I am feeling. And honestly, it depends when you ask. I knew at some point all of this would hit me, but I wasn't sure when. And then it happened...

Today I decided to get back into Crossfit. There were many things I gave up so I could solely focus on Conley's care and provide him everything he needed. In the beginning, I tried to do it all. To work, to exercise, to plan ahead...but it was just too much to juggle. I was too exhausted to do my one job which was taking care of Conley. I think the hardest thing for me to give up and truly accept was my health and fitness. There was no time to work out. And yes, all those people who post about how there are no excuses to not work out and eat healthy have never lived my life the last year. Or the life of any special needs mother. It is nearly impossible to do consistently. There was minimal time to cook, eat healthy or monitor your food intake because you ate when and what you could, since you never knew exactly when you would be able to eat again. You never knew when you would spend the next 8 hours in the emergency room. I spent a good part of the last few months leaning over the hospital bed attempting to comfort Conley or sitting next to Conley's crib, holding his hand. The last thing I thought about was working out and eating healthy because my son was dying.

There were many, many times that I was angry, resentful and mad that I had to give up my fitness and health. I have always worked out and been healthy. I grew up playing every sport possible. That was my coping mechanism. I hate admitting how angry I was about this. I found myself resenting Conley at times, and of course, that is hard to admit because it is so wrong to feel that way. And I feel immense guilt for that. For awhile, I tried working out even when Conley was sick, but ultimately, he was the priority. If I could make it to the gym, I was stoked. If not, oh well. But these past four months that Conley was so sick, the last thing I thought about was going to the gym. Until one Monday, three weeks ago. I had packed a bag to try out a new gym close to the hospital where Conley did dialysis for four hours. I figured I could sneak away for an hour since he had our amazing nurse with him. But, that ended up being the Monday he stopped breathing during dialysis. I could tell he wasn't feeling good, so I decided not to go work out - that's typically how it went down. Bag in car, ready to work out, having it all planned. And then I defaulted to stay with Conley because I could tell something was wrong. I cannot even imagine the guilt I would have felt if I would have left to work out and came back to find out he had stopped breathing.

But, today, I went to Crossfit. Because why not? Choice was back at school and all the family was gone. Friends are back to work and normal life continues for everyone else. So, why not me? I thought now is the time to try my new normal. I knew something was different as I drove closer to the gym and my stomach dropped. My heart felt sad and I didn't really understand why I had tears in my eyes. I sat in the car for 10 minutes to gather myself. It was great getting back into the gym and see all the familiar faces. Everyone was so welcoming and supporting, as always. I loved seeing all the people I've missed. But, I found myself becoming very emotional. All I wanted for the last 20 months (I couldn't work out during my pregnancy since it was so high risk) was to work out consistently and get back on a schedule. To be fit. To have a life. To be health. I wanted it so much that I became angry and depressed at times, and then complacent. So, why wasn't I excited to be there? As a friend of mine said during a recent breakfast date, "I'm thrilled to have access to some of your newly free time and heartbroken about why your time has become free." And that's when it hit me. The reason I could go back to working out without constraints is because Conley is gone. I tried to push these feelings aside and enjoy being in the moment, like Conley would want. I even set myself in the back corner for the strength part of the workout, partly because I was worried I would look like an idiot, and partly because walking into the gym made me emotional. I found myself tearing up between each strength set, leaning up against the wall, feeling so guilty that I had been angry at Conley, at the situation, for so long. I felt like curling up in a ball. I had a surreal feeling that I was in my own world, with people laughing around me and the music blaring, but I was all alone with my thoughts. I should have just enjoyed him more and not always desired to be somewhere else. And now that I was somewhere else, I wanted nothing more than to run home and be with Conley. But he wasn't going to be there when I got home. The last time I drove home from Crossfit, I was going to see Conley. And just like that, everything triggered feelings of sadness. I saw Bluebonnets on the drive home and thought how I never took a picture of Conley in the Bluebonnets like every other family. I passed a plant nursery and remembered how much Conley loved the butterfly healing garden. I just let myself grieve on the way home and took in the sadness, like I had always done. It is part of the process of healing. When I arrived at the house, I went over to Conley's tree and told him I loved him. And then, I felt the urge to blog. So I did. Because I know that all these feelings are normal and real, and I wanted to be able to remember all of these moments, good or bad. Someone, somewhere can relate, and I hope that it can bring comfort to them.

Choice went up and gave Conley kisses all weekend.

Grief is nothing new

October 29, 2014. That is the day we started grieving. This is the day we found out that something was wrong with Conley.

We had big plans for Conley. We had big plans for our family of four. We chose to have the boys close in age so they could be best buds, and do everything together. We wanted to take them to the same school, so Conley could follow in Choice's footsteps by charming all of the teachers. We wanted to have them participate in music class together. We hoped to enroll Conley in swim class. I had hoped to continue working out, doing Crossfit and Prenatal Yoga, just like I did when I pregnant with Choice. We wanted to visit family in California for the first time when Conley was a baby so everyone could meet him and love on him. We looked forward to being able to give the boys baths together so Choice could splash Conley and we could teach him about being gentle. I wanted the boys to wrestle around on the floor, get dirty at the park, and eat ice cream together. I planned to go back to work part time so I could still do the work I love, while also taking care of my boys. Taking care of my boys together. I anticipated being able to take them both places by myself; being able to handle the idea of two children under two all alone as most mothers do. I dreamed about them sharing a room as they got older and cuddling, maybe even having bunk beds, or a trundle bed. I wanted to pass Choice's clothes down to Conley. This is just a small list. There are so many more things I had hoped, wished, wanted, dreamed, and anticipated. Planned even. All those things you envision when having two children; a partner in crime or a best friend. But, none of this could happen.

Conley could not go to school, music, gymnastics, swim class, or participate in any group setting regularly because he was immunocompromised. He couldn't take a bath with Choice because he could not get wet in certain places due to his medical devices that may lead to infection. We could not travel to California because Conley had to be hooked up to dialysis every night, and packing all the supplies needed for just one week, or one night, was too much to even fathom. They could not wrestle or rough house because Conley was so fragile and prone to vomiting with minimal stimulation. Conley was not able to play in the dirt at the park due to risk of infection. Conley did not eat anything by mouth because kidney failure made him too nauseous all the time, so ice cream was out. Taking Choice and Conley alone anywhere was difficult, and sometimes impossible, given Conley's vomiting and constant one on one attention. Conley could not wear Choice's clothes because he could not tolerate shorts or pants due to the medical devices in his belly and his proneness to vomiting. He couldn't wear Choice's old shirts because medical devices on his chest would not be secured. Every doctor always wanted to see Conley's tummy, so even onesies were difficult to tolerate, so rompers it was all the time. Again, the list goes on.

The one thing that did go as planned was that the boys were best buds. Best friends from the first minute. While they did not, and could not, do a lot of things together, they loved each other so much. Their eyes lit up when they saw each other. Choice came home from school everyday and asked for Conley. Conley always reached and tried to play with Choice's hair. They were in fact best buds.

So while we were still happy that Conley was alive and with us, we were also grieving. So you see, to me; to us, grief is nothing new. We grieved most of Conley's life because the constant fear and anxiety that Conley could die at any moment was there. We grieved the life we had wanted for Conley. The life we wanted for Conley and Choice together. The fact the we were the ones in control of his every day care brought grief. I had to grieve the Chardonnay that I knew, and quickly adjust to the new role I had acquired without any room for major error. I lost myself; I lost who I was as a mother and as a wife. I was grieving that too. Every time Conley was sick and had to go to the ER, or be admitted to the hospital, or have a planned or emergency surgery, I was grieving. Seeing things that no mother should ever have to see created an unimaginable amount of grief. Tubes, wires, blood transfusions, multiple IV's, scars, open stomachs...just stuff in and out of my child's body every day of his life. I saw Conley suffer too many times, and I just sat there with him, grieving, every minute, because that's all I could do. That's what mothers do. So, I've become pretty good at grieving.

These past few weeks have been really strange to me. I constantly find myself consoling others as they grieve Conley's death and celebrate his life. And that's okay. I am truly okay with this. Because I've had his whole life to grieve. And that's when it clicked. To others who are on the outside looking in, the majority of the grief started after Conley passed. But, that's when ours mostly ended. Don't get me wrong, I am still grieving, but this grief feels different. Jonathan and I have talked many times about how we feel that others might look at us and wonder how we are not constantly in tears or how we are able to be so "strong" right now. How are we laughing and going out to dinner, and meeting up with friends? For example, today I picked Choice up from school and met with a friend for a play date at the park. Never would that have happened before. It was always 'get Choice from school and get home as fast as you could so we could take care of Conley.' I felt guilty that I was looking forward to this park date and having the freedom to enjoy the afternoon with Choice, while I should be grieving the loss of Conley. It's a constant struggle to my heart and mind, but thank God for Choice and his ability to distract me from any sadness. He has saved us. And I know Conley would not want me to feel guilty. He knew we did everything for him and about him. We all sacrificed for him, and given the chance, we would do it again. And as Jonathan and I talk about how we wonder what people think of our grieving process, once again, we are on the same page; and we just get each other. Especially in this moment. Jonathan and I as parents grieved for Conley's entire life. For what we lost, what we could not have, what we saw, we what had to do, the decisions we made, and for what we thought would be. And we grieved quite a bit behind the scenes; behind closed doors. And only when we started to share Conley's story through the blog, that is when the community started grieving with us. This is how my healing began. My healing began when I started the blog and allowed everyone to grieve with me.

"Our culture treats grief like a problem to be solved or an illness to be healed. We've done everything we can to avoid, ignore, or transform grief. So that now, when you're faced with tragedy, you usually find that you're no longer surrounded by people — you're surrounded by platitudes. The last thing a person devastated by grief needs is advice. Their world has been shattered. Inviting someone — anyone — into their world is an act of great risk. To try to fix, rationalize, or wash away their pain only deepens their terror. Instead, the most powerful thing you can do is acknowledge. To literally say the words: I acknowledge your pain. I'm here with you. Note that I said with you, not for you. For implies that you're going to do something. That's not for you to enact. But to stand with your loved one, to suffer with them, to do everything but something is incredibly powerful. There is no greater act for others than acknowledgment. And that requires no training, no special skills — just the willingness to be present and to stay present, as long as is necessary. Be there. Only be there. Don't leave when you feel uncomfortable or when you feel like you're not doing anything. In fact, it's when you feel uncomfortable and like you're not doing anything that you must stay. Because it's in those places — in the shadows of horror we rarely allow ourselves to enter — where the beginnings of healing are found. This healing is found when we have others who are willing to enter that space alongside us. Every grieving person on earth needs these people.  I beg you, be one of these people. You are more needed than you will ever know. And when you find yourself in need of those people, find them. I guarantee they are there." - Tim Lawrence  (http://www.upworthy.com/8-simple-words-to-say-when-when-someone-you-love-is-grieving?c=ufb6)

My heart keeps telling me that I should be grieving more now that Conley is gone, but I'm not. At least not yet. And I'm not naive enough to think grief is linear. I know it comes and goes. My heart and soul are not happy by any means, and I feel lost without Conley here, but I am not grieving any more than I have since October 2014. At least not how I was when Conley was alive. I keep telling people that Conley is okay. Because I know he is. When he was here on this earth, I could not tell people that he was okay. Because every day would change. I would have to say he is okay today; this minute; but we do not know about tomorrow. But now, I can say that he okay; forever. And I truly feel in my heart that is true. Therefore, I don't have to grieve anymore.

I don't know; and that's okay.

Conley has been my life, my everything, my 24/7 for some time now. Even when I wasn't directly taking care of him, I was doing something for him. I was making calls, talking to doctors, organizing his medications, agonizing over each detail or updating his schedule. And now that's over.

I've had many people ask me several different ways, "What's next?" As in, will you go back to work? Will you still work with kids? Are you going to Crossfit again? Maybe you should work with parents like you and use your degree to counsel them? What will you tell Choice? I have also had many propositions for volunteer roles, or maybe write a book, and speak at events. In the midst of these conversations, I found myself stuttering, and feeling indecisive. And then I think to myself, wow, that's a good question. I have so many OPTIONS and CONTROL over what will happen next and I have no idea what to do with it. It makes me feel overwhelmed and anxious, and unsure. Scared. Then I think how ironic that is. I had NO CONTROL and NO OPTIONS for so long that I had really found myself surrendering to the flow of life. Just taking what came. I stopped planning or expecting. I just woke up every morning and thought, "okay, what's happening today and how will I feel about that." What battle will we face today? To say each day was different would be an understatement. Every hour was different. And to someone like me who was always wanted expectation and plans, to be set on a schedule, with little flexibility and minimal capacity of major change, that was by no means easy. It took me so long to transition to role of spontaneity and unknown. So long, and lots of therapy.  Soul searching. I hated not knowing what to expect, and not being able to be proactive. I was always someone who was prepared, understood early and got ahead of each obstacle. That is how I minimized anxiety and became a perfectionist. I was always on top of everything. I couldn't be anxious if I was overly prepared; if I knew what to expect. But, Conley changed all that. 

In the beginning, I was scared, angry, resentful, traumatized and living on edge. I had to accept that some things had no connection, no reason and no answer. Most of his life could not be fixed, and I was a fixer. I wanted to know why everything happened, so I could prevent it. Especially all the bad things, and the pain, and discomfort. All the vomiting. That was the hardest part. If I could find the reason why he was uncomfortable, I could fix it. But, really, I couldn't. I finally realized that. So, I had to accept that, and learn that I could not fix some things. I had to be okay with that and still be there even though I could not do anything. Just in the moment with him, so he knew that I was trying. Many times I felt like I had failed him. True mommy struggle. I could not help him. What a horrible feeling.

And at some point, it just happened. I adjusted. I became "okay" with late night ER visits, back to back doctors appointments, quitting work, not being fit, and having to be reactive. I still did not like it at all, but I became good at it. Not just good, but amazing. I owned it. I was good at being reactive. It didn't stress me out as much as it used to, or send me into a panic attack like in the beginning. Shit happened, and then I went with him and reacted. I was decisive and direct. No stuttering. I knew every last detail. I mean, if this was my job, and my world, I was going to master it. I turned my biggest fear into my biggest triumph. I knew everything about Conley. EVERYTHING! Every sign, symptom, medication name and dosing (he had about 12 prescribed), specialist name, ER visit, hospitalization time, number of surgeries, vital signs...The list could go on. I learned to make decisions fast, and without hesitation because on certain occasions, time was not on our side. At least three occasions would have ended this blog sooner had I not reacted as I did. 

But now, I stand in the midst of these conversations, and there is no answer. I don't even know what to say. Because any answer I chose is right. There's no wrong answer this time. Only what feels right to me. And to be completely honest, I have no idea. At any point during our journey, I would have said I wanted life to go back to how it was, with me working with children and exercising every day. Taking Choice to music class and gymnastics, having play dates and cooking or baking every weekend. Planning trips to visit family and cuddling next to my boys when they have a simple cold. Learning I was pregnant again and giving Choice a sibling that would be so close in age. Before all of this happened. 

But now that I have options, I feel very unsure. I have the chance to press the reset button and I don't even know where to begin. So, I decided to begin by acknowledging that I don't know. I don't know what I'm going to do, or how I'm going to feel; what path to take or what will make me happy. I just don't know. This journey has taught me that I cannot predict how I will feel during each step. Never would I predict I would have felt more love and joy than pain and grief during Conley final days in my arms. Never would I predict that I would want to hold him as he took his final breath. Never would I predict that I would want to share every last detail of his life with strangers. And then I think, how cool is that? I get to live today and learn something new about myself each day instead of trying to fit into this fixed presentation of what I thought I should be. Or what I was. Not many people get that chance.

I don't know what I'm going to do, or how I'm going to feel; what path to take or what will make me happy. So, I will do what I've done so well for so long now, something that Conley has effortlessly taught me. And I am so grateful for. I will do what I feel today. I will wake up each morning and see what today brings. I will live in the moment instead of trying to decide what to do weeks or months from now. If I want to do something, great. If not, who cares. I have time. Because although we always have plans and dreams, nothing is guaranteed but this moment right now. So let's just embrace it.

Pictures of our Final Days

In true mommy fashion, I wanted to have as many pictures as possible to remember Conley's final days. He was surrounded by so many people that loved him. So many. What a lucky boy. And what lucky parents we are to have created such a gentle soul.

https://goo.gl/photos/gjfAQeyzM6EEBDS76

In honor of Conley

Thank you to everyone who has offered to bring meals, send flowers or donate somehow. Jonathan and I have agreed that we would like to honor Conley by asking others to support families who continue to advocate every minute of every day for their warrior children. We know the depth of this journey for all those involved. As Nana says, please let them know Conley sent you.

https://www.crowdrise.com/supportfamiliesofchildrenscomprehensivecareclinic/fundraiser/supportthefac

A Peaceful Goodbye

Blogging throughout this journey has created a wonderful outlet for me to not only keep many friends and family updated on Conley's condition, but has also gave me an immense amount of comfort and peace with what we were facing. Never would I imagine how much this blog, and Conley's life, would create the most powerful human connection I have ever known. His life spoke through my words and allowed others to connect on a whole different level. I am so honored to have been his mother and share his story with the world. With that said, I felt it was only appropriate that I share the beautiful and peaceful end to Conley's journey in this life.

While I could discuss at length the conversation Jonathan and I had to face when we decided not to pursue further medical intervention for Conley and surrender to the fact that we had reached a point the it was only hurting him more than saving his life, that decision would only truly make sense in our world and in our hearts. And by no means do we feel the need for acceptance with our decision. However, I will say that we were blessed to have been on the exact same page with every ounce of our decision, and our hearts joined in understanding the magnitude of what we had concluded. We had always asked one of our doctors, whose opinion we value immensely, to tell us when he thought we had reached a point that we were doing too much. And as we all sat together to talk about Conley's journey on Monday morning, it was without a doubt we all agreed we had reached that point. We didn't even need to say it out loud. We just knew.

During this conversation, we were told that a "good" thing about kidney failure was that the easiest decision moving forward was to refuse dialysis. Parents have the right to not pursue dialysis even though it is life sustaining. We did not have to make many decisions, and withdrawing dialysis was the most straightforward approach so we coulf be at peace. We were also told that this would simply mean Conley would accumulate fluid, his electrolytes would alter, and he would simply become "sleepy." From then on, the plan was the make sure that Conley would also be comfortable while "sleepy," as his lungs would start to fill with fluid and he would no longer be able to breathe.

Once we decided that we no longer wanted to pursue medical intervention, we met with a range of people including the palliative care team, a psychologist and a chaplain. We were fortunate enough to have people in this meeting that have known Conley intimately and through all walks of life. This meeting was to talk about "what now?" How do you make your child's transition peaceful and comfortable? And all I can say is Wow. This group of people lifted us up to a place I never thought we could be during such a traumatic time. While the conversation was definitely painful and unfathomable, I somehow found a huge sense of relief. I finally had some control. I could control how my son died. I wasn't leaving that up to a surgery, an ER visit, or a medication. I was now planning how to keep him safe, comfortable and alive in my heart rather than advocating for him to be hooked up to machines, or asking for more tests to make more scars on his tiny body. It was as if we were set free, and so was he. Finally. Free from decisions, free from having to be so strong and free from any schedule or appointment. Conley could do it however he wanted and we were just going to make that as comfortable as possible for him. As I said before, there was a shift in our hearts to a place of pure surrender as we made a choice to transition to an intervention that involves love, peace and sacrifice, so that Conley would no longer suffer.

The first thing we did was get him out of the ICU and off all of the machines. We had several options including staying at the hospital, taking Conley home on hospice care or going to another location. We felt it was best for our family to remain at the hospital so his medication could be closely watched due to previous difficulties with sedation. We were allowed to spend his remaining days on the 4th floor (oncology unit) that had treated us so well many times before.

I wish I could say it all went according to plan, but let's be serious, we are talking about Conley. He is a science project that has never been studied. One doctor even said to me, "I think everyone missed the day in school when they presented Conley's case." Meaning, there has never been one quite like it. It took several days to find the right medication combination that would put Conley's mind and body at ease, and to say waiting for that process to settle was torture would be an understatement. But, so worth it, just like many times befote. He had just built up such a tolerance to any and all drugs that we had a hard time finding a peaceful, numbing effect while not causing respiratory distress. But, the doctors were relentless and determined to help us put Conley at ease. We finally found a combination of medications that put Conley in a deep, comfortable sleep for his remaining days. He wasn't alert or awake, but he also wasn't suffering anymore. We were lucky to have an amazing doctor who guided us through each part of this process, down to every minor detail by coming in at 3am to relieve my breaking heart. He even walked me through the awkward questions such as what Conley would look like when his body started shutting down. I had advocated for Conley every day and even down to the last minute, that I finally told the doctor I wanted to relinquish all care to him. I told him what I wanted, and he made it happen. I wanted to spend the last few days being Conley's mother and that's it. Not his doctor, nurse, caseworker, social worker, etc. Just his mother. Our team of doctors accepted that decision and supported us with no question. They gave us guidance on things we never ever wanted to know, including services, what do with Conley after he was gone, and how to celebrate his life. They provided a room for people to visit Conley (basically a viewing) with an additional room close by that provided coffee, drinks and snacks donated by the cafeteria at Dell.

For the next four days, we extended an invitation to those who loved Conley to come say goodbye. Family flew in from all over the country and many people were blessed to come hold, kiss and talk to Conley. I had said so many times that I was fortunate enough to hear all the amazing things people say about Conley,  but he hadn't, and this was the time for everyone to tell him how much of an impact he has had on the world. Doctors, nurses, therapists, residents, interns, security guards, you name it, and they came. Literally, a revolving door. But, man what a treat to hear and see the love in his room. THIS was the ending we wanted. Not during surgery, not in the ER, and surely not during an attempt at a life saving intervention. The intervention we chose was known, planned and peaceful, unlike so many other times in his life. We were even able to bring Choice up many times to cuddle with "sleeping" Conley and cousin Victor came to "throw kisses" at him. We took several walks out to the healing garden with family and friends, feeding the fishes and playing music. Even mommy took Conley on our typical hospital route we had walked so many times, as we would go get coffee and then cuddle together on a bench of the healing garden. Mommy got to lay with Conley all night long in a big boy bed as we waited for him to tell us when he was ready. We got a large bed (for bariatric patients actually) so we could cuddle and hold hands. I could hug him, kiss him, cry for him, laugh, tell him stories, watch videos of him, and just stare at the peaceful sleep he was in. I pretty much stared at him for the majority of the night because I didnt want to forget what he smelled like or how his face fell. While I was overjoyed to have all the visitors during the day, I was even happier when it was nighttime and I could have Conley all to myself. All this with no machines beeping, wires attached or tubes in his mouth. What a treat for me. This is kind of how the story started, with Conley and I laying in a hospital bed together just waiting patiently for what came next. And this is how it ended. The staff pulled all the strings for us so we could give Conley the ending he deserved.

Conley decided to leave this world on Friday, March 17th at 3:26am while laying in mommy's arms. I had been cuddling with him all night and usually just stared at him. But, I had drifted off to sleep and something urged me to wake back up. I looked at him and gave him a kiss on the forehead. He hadn't been really responsive to touch the past few days due to sedation, but this time, he turned his head toward me. He let out a huge sigh. The type of sighs that you make when you are at ease. When you have accepted. Over the past few days, his breathing pattern had changed. He'd let out a big breath, and then stop breathing, quickly to go to shirt spastic breaths. But this time, the breath was different. So I waited and watched. That ended up being his last breath. I put my hand on his chest and could still feel his heart beating, but the pounding became more faint over time. I picked him up so I could hold him as he finally stopped suffering. I held him for hours after. It was impossible to put him down knowing that I'd be walking out of the hospital without him this time, and not coming back in the early morning. He laid there so peacefully though, and I knew this was perfect. Painful, but perfect. I am so glad he waited to share this moment with just me. I couldn't have imagined sharing this moment with a bunch of people. He was mine, and I was his for so long. I will miss him so very much.

Conley Duke Weems
January 26, 2015 - March 18, 2016.

Conley Duke

These past few days have created a shift in our hearts to a place of pure surrender as we made a choice to transition to an intervention that involves love, peace and sacrifice, so that a our baby boy will no longer suffer. He has touched so many lives in his short time in this world and has been surrounded by so many friends and family these past few days, exactly what this social butterfly would want. We will be celebrating his life this Saturday at 12:30pm at the park at Harris Branch Recreational Center located at 11401 Farmhaven, Austin, 78754. Conley would be honored to have as many kids, friends and family come celebrate his amazing warrior spirit...we will miss him more than any words can explain.

I hope he knows how much we love him

For the past few days, I have talked at length with many specialists, including nephrology, oncology, neurology and palliative care. There is still no concrete explanation for Conley's presentation because it is not a clear this or that, like an infection or cancer diagnosis. All of the "yes or no" questions have not provided any more information about his long term prognosis. No information makes everything much more difficult to tolerate. 

As I mentioned before, Conley's MRI showed neurological abnormalities, such as lesions/damage, to the caudate and putamen, both parts of the basal ganglia. This part of the brain control voluntary and involuntary movement (such as Parkinson's Disease).

The most plausible explanation for everything going on and one that most specialists are in agreement with (despite no research ever showing such side effects or known connection) is that the chemotherapy caused neurotoxicity, leading the encephalopathy (brain disease that alters the brain function or structure). The chemotherapy medications that Conley was given had no known effects on the brain, but most patients that have been studied did not also have renal failure, so as always, Conley's situation is complex and unique.

Since Conley started chemotherapy, he has had a hard time during hemodialysis. He has been more uncomfortable, inconsolable and distraught. For weeks, we thought his medication (pain/sedative) was being removed too quickly by dialysis, and we would add extra doses of his medication, like Methadone, which did nothing. We were forced to watch him be "uncomfortable" for hours, not knowing how to console him. The rare twist is that he was not like this outside of hemodialysis, and he was more "normal" at home. This presentation was also occuring the Monday we were admitted to the ER. But, as I noted, this time Conley also stopped breathing appropriately. Conley has presented with similar symptoms this past week despite ongoing sedation and pain medication. Well, after extensive talks with many, many doctors, it has all started making sense. Unfortunately, I know Conley better than anyone. I see him every minute of every day and night, and a clear timeline of the progression of his illness is forever embedded in my mind and heart. I know him inside and out, and my instincts has always been right, despite even medical professionals doubting my thought process. I hate that I'm right because usually it's not a positive outcome.

It is turning out that Conley's presentation is a neurological issue (not pain or discomfort). Several weeks ago, Conley presented similarly, like I noted in previous blogs, and I worried something more was occuring. But then he got "better." Relatively speaking. He was better, but not his normal self. This time around, it appears that the neurological impairment is  causing involuntary movements, which cannot be controlled by sedation or pain medication. While it is comforting to know he may not be is distress, it is surely annoying and uncomfortable for him to be unable to control his body and limbs. The neurological damage sustained by chemotherapy appears to have been exasperated by hemodialysis to the point that it compromised the brains ability to communicate with his respiratory system, hence the quick decline in breathing. Cleaning the blood during dialysis seems to have limited the oxygen to the already damaged part of the brain causing it to be exasperated during hemodialysis, the only time he has been very "agiated." All this time we thought he was agitated, and it turns out he was just showing neurological signs of a movement disorder. People always said he was "agitated" or "irritable," but deep down I knew that wasn't right, and always wondered why it was so specific to that time period. That is not how Conley shows irritability. 

The movement disorder has not been officially diagnosed yet, but it's presentation is similar to chorea or ballism, which is caused in most cases by a decrease in activity of the basal ganglia (where putamen and caudate are located), resulting in the appearance of flailing, ballistic, undesired movements of the limbs. The only thing that has calmed his spasms is Thorazine, which is an anti-psychotic medication that blocks dopamine receptors. It is such a horrible feeling to have your one year old son taking anti-psychotic medication. He is either heavily sedated with Thorazine or he is flailing around uncontrollably. No one can tell me if this is temporary or permanent. I haven't even seen Conley open his eyes and look at me or recognize me since we were admitted.

These past few days have really made me question whether this is the life Conley wants, and it's pretty clear that it is not. What is unclear is that we do not know if the same thing will happen if he goes back on hemodialysis or receives further toxic intervention. We also do not know if time will heal him, but while we wait for answers moving forward, I have to remember that he is a person today.

Tomorrow we will meet with all of his specialists to have a care conference about his prognosis. This past week has been all about putting bandaids on symptoms and masking Conley's presentation, and it is too much. The bandaids eventually fall off and the medications don't work anymore. All of the intervention has started becoming more toxic and detrimental to his body than helpful, and I miss my son. I miss him terribly. Some people may wonder how I can make a decision not to pursue any intervention possible to "save" Conley, but what type of life would we be saving him for? They say "stay strong" or "keep fighting," or "he will pull through," but what are we fighting for? When you read through his life story these past few months, it's unbearable that any child should go through this. And it's not as simple as a one time or temporary illness or trauma, this is ongoing and continuous. This is his life, and this WILL happen again. But at what cost and how much more will he sacrifice? And what mother would continue putting her child through interventions that are likely to worsen a child's situation and deteriorate their body as a selfish act to keep them around. THIS is the internal battle I've dealt with for days; actually months. It was just masked by appointment after appointment; treatment after treatment; bandaids. Both choices are horrible and so overwhelmingly devastating for me. No matter what, I lose. So now the conversation is about what will help Conley win. As a friend said, "logically you know that this is not the life you want for him. And your heart is protecting and trying to say but no, keep fighting. Logic and your heart are battling."

This has been unbelievably emotional for me. I just want to know he will be okay; that he doesn't want to keep fighting. I know there are times I complained about having to take him to the doctor, bearing the burden of all his medical care, quitting my job, living at the hospital, not exercising, being away from the family and not having a "normal" family. But I hope he knows I'm not making any decision lightly, and I'm not having these thoughts because I'm tired of trying, or I'm in pain, or because I don't love him or care for him, or that I can't go on like this. I'm doing it because I do love him and I don't want to see him suffer or be just some experiment anymore. I want him to tell me I haven't failed as a mother or his caregiver, and that I tried my best given the circumstances. I just couldn't make it work for him. I haven't been able to make him healthy but what I can do is help him not suffer anymore.

No words

I post these pictures only to show the depth of his illness. My words and blog posts can only express so much, but this is the image I've seen too many times. It is so unfair for him, and for me, and I just don't understand why we deserve this. I am at a loss for words and I can't stop crying.

We are still waiting for news, any news, as to what is going on. It appears that the neurological symptoms are separate from the respiratory issues. All cultures have been negative, though there is a chance an infection may not be found since he is on consistent antibiotics at home, and that may mask any new infection. He has had significant changes in his blood pressure and heart rate the past 24 hours with no explanation.

As far as his neurological symptoms, the common consensus is that one of his chemotherapy medications may have caused some alteration in his brain function (as his MRI showed some abnormalities that we not present several months ago), though there is no direct correlation or documented connection to date. We also do not know what affect the abnormalities have had, or if it is temporary or permanent. We are working with the oncologist and now neurologist to potentially change his chemotherapy protocol.

Thank you for the continued support.

So many unknowns

As you know, Conley started Cycle 2 of chemotherapy at the end of last week. We knew that this would be a difficult weekend, but had hoped for some sort of comfort given that we were able to eliminate other factors (such as withdrawal) heading into the cycle. Overall, Conley had a pretty good weekend despite vomiting most of the time. Come to find out that someone dropped the ball and we were not prescribed a medication that significantly reduces nausea and vomiting. As a mother, it just breaks your heart to know there was some way to prevent such suffering for your child. But, as I've learned, Conley's case is extremely rare and these things happen. You learn that there is only so much you can remember and coordinate, and it is much harder when you do not know something is missing until after the fact. Even with that said, there are many things out of our control in this situation, but the things you can control and somehow are missed, makes it that much harder to tolerate.

Despite Conley's vomiting, we had a pretty good weekend. Sunday was an especially nice day as the entire family, plus Nana, spent most of the day walking outside and enjoying our new neighborhood. Choice and Conley thoroughly enjoyed holding hands and walking around together wearing matching beanies since we recently shaved Conley's head. His hair had started falling out in chunks so we felt the time had come.

On Sunday night, I started noticing that Conley was more constipated, a common side effect of chemotherapy, so I called the doctor and they prescribed a stool softener. We gave it to Conley and within hours, he threw up that medication as well. This time, his vomit was bright yellow, and later on had turned dark brown. I went back and forth about whether I should call the doctor or not, but realized that his vomit is not usually colored since he does not eat any real food. So I called, and they told us to come to the ER to rule out any bowel obstruction. Good news is the xray ruled out an obstruction and Conley pooped while in the ER. Yay. However, during our monitoring, he destated, meaning his oxygen flow dropped significantly. Conley has no permanent lung issues, so this was uncommon and scary. The doctors could not explain why that happened, but instead, gave me the option of staying the night or going home since we already had a scheduled follow-up on Monday morning. I chose to stay the night (I never thought I'd choose that), because I was concerned and also it was already 11pm. Conley did fine the entire night and his oxygen level remained perfect so we were discharged on Monday morning. We spent the day at multiple follow-up appointments including Endocrinology, Oncology, and then straight to Nephrology for his regular hemodialysis appointment.

During hemodialysis, Conley had his typical presentation post chemotherapy, including restlessness and discomfort. We were able to hold him and comfort him intermittently. He was also given some Benadryl to help with vomiting and relaxation. We were about 30 minutes from finishing when Conley destated again. This time, it lasted much longer and he was only taking about 6 breaths a minute (should be at least 15 per minute). Given that he was not recovering on his own with oxygen flow at the clinic, the nurses called 911 to get an ambulance to transported Conley to the hospital. Let me remind you that the clinic is right across the street from the hospital. This means they were that concerned with walking Conley across the street in that five minute period that they called an ambulance to come transport him. I have to admit I did not really understand what was going on and did not process how real this all was until at least 24 hours later. While in the ER, Conley had multiple similar episodes of destating, so he was admitted to the ICU. Conley did an xray in the ER, and another once he got to the ICU hours later, and within that short time, his lungs had completely filled with fluid. He was intubated and sedated heavily, right back to where we were just a month ago. They suctioned out his lungs and there was lots of bright yellow mucus (similar to what he vomited all day on Sunday).

So far, there is no explanation as to why this is happening. Initial thoughts were infection but all tests for RSV and viral infections have come back negative. We are still waiting on the pneumonia tests. All cultures for bacterial infections are still negative. Despite all the negative results, they have started Conley on a range of antibiotics just in case there is an infection that has not been detected. They have also done tests to rule out any heart and brain issues, including seizures, which were normal/negative. He will next be receiving an MRI of his brain to rule out tumors or cancer in his brain. Apparently, it is possible that hepatoblastoma can spread to the brain and one of his blood results that tests as a tumor marker has been elevated since previous weeks. He was also set up to do an EEG to monitor brain waves. It has shown delayed responding, which is of concern, but unclear if it is temporary due to peripheral factors, such a chemo, or a more long term effect such a neurotoxicity. (Neurotoxicity occurs when exposure to natural or artificial toxic substances, like chemo or other medications, alters the normal activity of the nervous system in such a way as to cause damage to nervous tissue.) We all know that Conley presented with many scary neurological symptoms after his first cycle as well, so this creates additional concern for this time around. There has been talk about "too much chemo" since Conley has poor renal function, but this has not been clarified yet. So, back to unknowns. And waiting. And suffering.

Every time this happens you feel like you will prepared for next time, because there will always be a next time. But I wasn't. I spent Sunday night in the ER to be discharged to 3 doctors appointments, just to come back to the ER and stay the night in ICU. Conley was intubated in front of me. I usually don't watch, but there was no time to tell me to leave. And now his lungs and brain may be compromised. The two organs I felt we could lean on. The hardest part is that I knew I had to go home to sleep and shower last night, but I couldn't stand the thought of leaving him alone. It is an awful place for a parent to be at any moment, and it is a regular battle for me. I made the decision to leave and I cried the entire way home feeling so guilty. Not just cried, I sobbed. Yes, all normal feelings I know, but it does not make it any easier. Jonathan and I took Choice to music class together and then went out to dinner. For a moment, we were all happy again. I spent the night cuddling with Choice and Jonathan during a crazy thunderstorm. And then I drove back to the hospital this morning and cried the entire time. I can't believe it's only been 48 hours. To be honest, I am a mess. It never gets easier.